Source: Al.com By Martin J. Reed | [email protected]
When she heard about today’s announcement that studies under Carly’s Law have received federal approval, Michelle Graham of Thorsby cried at the thought her daughter may soon benefit from an experimental marijuana-derived drug that could control seizures.
“I’ve been in tears all day. I am so happy. This is a whole new life for my daughter. Her daddy and I, we are at a loss for words for our daughter and all of the other children of Alabama. We’re so happy this has come true,” Graham said.
The University of Alabama at Birmingham’s medical school today announced federal approval to commence the study of cannabidiol — also called CBD — a marijuana-derived medication that often comes in oil form to treat seizures.
Authorized by the Alabama Legislature last year, the study known as Carly’s Law gets its name from the 4-year-old daughter of the Birmingham area’s Dustin and Amy Chandler. The study will utilize a special form of the CBD, which does not have any of the intoxicating properties associated with marijuana.
The Chandlers have been pushing to allow the study that could potentially benefit children suffering from seizures, including their daughter who has a rare genetic disorder called CDKL5. Parents from around the state have expressed hope for their own children.
Michelle and Matthew Graham’s 3-year-old daughter, Christian, has an extremely rare genetic disorder known as chromosome 10p15.3 deletion. “There’s only 26 cases at all, period, of what she has,” her mother said today. “She’s missing a part of her DNA.”
Christian also has rare epilepsy. “It’s uncontrollable,” her mother said, hopeful about the potential opportunity for her daughter to participate in the Carly’s Law study that will accept 50 children and 50 adults. “We have the packet in the mail and her doctor is submitting it tomorrow.”
Elsewhere in Alabama, parents expressed joy and surprise by today’s announcement.
“I am very excited. It’s been 11 months and two days after it was signed,” Amy Young of Wetumpka said. “I was incredibly excited and I just speechless that it’s actually happened.”
Her 3-year-old daughter, Leni, had a stroke in utero that “destroyed about 85 percent of her brain,” she said. “She has dozens upon dozens of seizures a day.”
Young, like many parents who have been waiting for the chance to use CBD for their children, knows the drug is not guaranteed to work. “I am cautiously optimistic for her. She is on one of the most powerful, well, two of the most powerful seizure medications there are. One of them they consider the last resort — and it does not control the seizures,” she said.
“Seizures are deadly. Seizures kill people all the time. But this isn’t something that is like a magic bullet that’s going to work for everybody. Just to have the opportunity to try it to hopefully get some relief is huge,” Young said.
Just the opportunity to try the drug is giving parents hope.
“You’re going to be hopeful, cautiously optimistic,” said Pelham’s Susan Lee, whose 7-year-old daughter, Alyssa, has the genetic disorder called Rett Syndrome. Alyssa developed seizures in May 2014 and medication has not worked to control them.
“Any parent of a child with special needs will tell you that you want to do something instead of nothing, and up until now we’ve felt like we were doing nothing,” Lee said about the lack of progress with any treatments. “There’s no guarantee it’s going to work but at the same time you’re trying something. … We’re just very optimistic.”
For Alyssa, she was energetic and alert like most girls her age before the seizures started. “Now on days she has seizures, she’s just there, she’s not her animated self,” her mom said. “Even if you could just remove that one seizure aspect and control that better, it’s going to make her life better.”
The heavy-duty pharmaceutical drugs that children including Alyssa have taken have not proven to be effective in some cases. “It’ll work for a week or two then they’ll come back. It’s like her body responds to them for a week or two … then figures out a way around it,” Lee said. “She can have as many as seven seizures a day and then have none.”
Lee worries that seizures can be life-threatening for those who suffer from them. “As a parent you put your kid to bed every night and wonder, ‘Is my child going to wake up in the morning?'” she said. “As a parent, you want to do anything that is going to make life better for her.”
Concerning her 8-year-old daughter, Avery, who also has Rett Syndrome, Carrie Akins of Foley said she’s “cautiously optimistic” about today’s development with Carly’s Law. She is hoping her daughter will qualify for the trial study.
“It may not work for all of our kids, but we at least feel we deserve the chance to let them try it because for Avery it is our last option,” her mom said. “We’ve exhausted all conventional medical treatments. Currently she three takes three anti-epileptic drugs daily. … We’ve tried everything else but nothing works.”